HealingWell
Search Close Search
☰

colonoscopy is clear--why do I feel so sick?!

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/25/2012 5:05 AM (GMT 0)
I had a colonoscopy today as part of a research trial, and they found no disease activity. I feel like I should be happy, but at the same time, it is really invalidating to hear that they can't find the disease I know is active.

My CRP and WBC are higher than they've been since my resection, and my score on the CDAI (a symptom measure used for research) showed a moderate level of symptoms. I know it is possible that my disease is active further up in the small intestine than they can go, but I'm still feeling discouraged. I'm in so much pain in my back and joints that I have to take rx pain killers. I am dealing with either C or D pretty much daily, and I'm just plain tired of all this! I'm really disappointed that I don't qualify for the study--I had hoped it would help. And now I'm left wondering, if its not Crohn's, what else?

Has anybody else run into something like this? What do you do? I want to get my health back on track whatever it takes so I can stop taking pain killers and get on with my life!
Posted 9/25/2012 6:23 AM (GMT 0)
Hi gilsonal,

Sorry to hear you're not feeling well and frustrated, we can relate.
To this point the only (I use "only" lightly, it's enough in itself) testing completed on you to check for activity and or inflammation of Crohn's has been blood work and a Colonoscopy?
They need to go beyond those tests and if you're not happy with what's been done and the results, I definitely recommend requesting the rest of the tests to be completed. If your current GI doesn't want to comply, see a different GI for a second opinion.

We recently have discussed the tests that need to be completed to indicate an issue with Crohn's, which are also used to rule out Crohn's.
Here is the thread if you would like to have a read-
www.healingwell.com/community/default.aspx?f=17&m=2511307

Let us know how things go and best of luck!
Posted 9/25/2012 12:12 PM (GMT 0)
I agree. A colonoscopy is simply not enough for Crohn's: you can't rule it out until you've been through more tests.

I hope something is found, not because I want you to have Crohn's, but so that the doctors take it more seriously. Best of luck.
Posted 9/25/2012 1:55 PM (GMT 0)
One thing you can do is try a gluten-free diet for a couple of weeks and see if that makes a difference. It did for me.

Another is to take Pentasa (I'm can't recall your med history), which is active throughout the bowel.

My joint pain was improved quite a lot by sulfazine, maybe that is something to consider. It's an inexpensive med and very effective.
Posted 9/25/2012 5:53 PM (GMT 0)
Testing: I've had IGA and IGG testing, which revealed a number of food allergies I'm working on eliminating from my diet. I also have lots of nutrition deficiencies and am taking a boatload of supplements to deal with that.

My small bowel exam was inconclusive, didn't really show much but it hasn't before when my disease was active. Blood work across the board suggests inflammation. I think my next step is a pill cam, but that is going to be tough to convince my insurance I need, I think.

I have taken Pentasa, and didn't really feel it did any good :/

I guess I still need to wait and see what the pill cam finds further up than where the colonoscopy can go, I'm just worried that after all this, something ELSE will be wrong with me, on top of all the GI stuff!
Posted 9/25/2012 6:34 PM (GMT 0)
Forget about the IGA and IGG testing and just go gluten free for 14 days. If gluten is a factor for you, you will know it.
✚ New Topic ✚ Reply